Tuesday, January 1, 2013

Here we are. A new year, full of new goals and plans (or maybe just old goals brought back to life). Maybe it's the holidays and all the time I've had with friends and family and the two week vacation I've had with Joe, but it's hard to shake my positivity.

Last Thursday, we had our follow up appointment with the behavioral psychologist that saw Davey at the beginning of December. I drove to the appointment alone, full of anxiety. Not because of what I might hear, but just because I wanted it over with. All the speculation over my child has been nothing short of heart wrenching and it takes everything within me not to scream "Leave him alone!" But you can't react that way to care and concern. Or maybe you can and I just lack a back bone. It's probably that second one.

After waiting for the doctor for what seemed like a year, she finally called me back to her office and sat me down with hundreds of pages in stacks. They were a mix of literature on children with special needs, files based on his medical history, all the questionnaires I filled out at the last appointment, and I caught myself scanning over every stack just looking for that one word. Autism. Just go on and say it, lady. My kid has some form of autism. Sure enough, about 10 minutes into her explaining a bunch of stuff that was basically just white noise to my right brained self, there it was towards the bottom of the page she was pointing out - "It is likely that Davey has Pervasive Developemental Disorder - Autism Spectrum". I took a deep breath, waiting for her to get to that part of the page. I forced myself to tune in a little harder so I could really understand how she came to that conclusion. She said a lot about how he was a very kind natured child. He's very easy going. But that this would be a probably be a problem when he reached school age, as he places no value on someone asking him to do something. He's in his own little world. He's interested in the things he's interested in, but doesn't care about things he isn't. And, again, this is a problem...

I asked a million questions, trying to wrap my head around all this information. But I was never...scared. Not upset. Not unsure of what to do next. I engaged with the psychiatrist, and understood that basically all of this stuff just means Davey understands things differently from "normal" children. I've always wanted my children to be as individual as they can be. Please be different, little birds. There shouldn't be anyone like them. It wouldn't be right. She said that these things Davey wasn't doing were things that would just require Joe and I to spend more time with him and really get to know what makes Davey motivated. What makes him happy. Deal! I just couldn't be afraid of what this doctor was telling me. I heard her words, but I also knew what they meant. And then, all of a sudden, SHE started crying! One of the stranger parts of the appointment. She said she sees parents all the time, that she has to deliver this kind of news to. And every time she does she sees complete and total hopelessness wash over their faces. They usually break down and don't know what to do from this point. And here I was, smiling, staying positive, and not letting this stir me or make me think any differently about my darling prince. And that made her cry. Which really meant a lot to me and has since made me maintain that positivity.

All that being said, Joe and I talked about all of the information she gave us. We talked about how we felt about this doctor and about how our pediatrician, who's seen Davey since he was 6 months now, and who has screened Davey FOUR times for autism, didn't just disagree with the diagnosis, but seemed a little upset with how much he disagreed. I never felt comfortable with this psychologist and seeing her at all was just to get insurance to cover him for speech therapy, not because we felt there was a need for seeing a behavioral psychologist. All of this went against what felt right to Joe and I. She called Davey "Aubrey" (his middle name) on several occasions, despite me correcting her. She said things in his evaluation about how he "was unable" to stack rings on a ring stacker and "was unable" to build a tower with blocks. But those things were only available to him for about 10 minutes and he was never asked to do either of those things. I don't know that he would have, but he might have. Our pediatrician recommended a second opinion from a more reputable doctor. And Joe and I have talked about the fact that this doctor may come back and say "well, yes, he does have PDD", and we need to be prepared for that. But ultimately, when discussing our child and his life, we want to be comfortable and satisfied that someone did what we feel is a thorough job. And while the doctor we saw was perfectly fine, she wasn't one we were ever comfortable with.

Maybe Davey is part of this world of autism spectrum. Maybe he'll learn things differently from Charlie. Maybe he'll see the world in a different way. In Davey's own particular way. If you want me to me scared or worried about those things, you're barking up the wrong tree. I can't be scared that my child - my beautiful, brilliant child - has anything "wrong" with him. That it's "wrong" or that it needs to be "fixed" that he does these things in his own way. Yes, I want him to be successful in a school setting and I do think it's important to take measures necessary to make him somewhat school ready. I think, for now, at 3 years old, those measures are speech therapy. I think, like everything in life, the best approach is one step at a time. It was only two years ago that we were literally teaching Davey to take one step at a time. Put one foot in front of the other and trust that mommy and daddy will help you if it gets hard. Here we are now and that lesson is exactly the same and just as meaningful.

I'm scared of car accidents with my kids in the car. I'm scared of high fevers and their teenage years when they don't want my hugs as much. But I'm not scared that something is wrong with this sweet boy. Look at him. Everything about that child is exactly right. If he has autism, if he writes with his left hand instead of his right, if he sleeps in his tepee tent for the rest of his life, nothing is wrong with my amazing boy. He's just as he should be. Happy and three.

Monday, December 3, 2012

For the sake of keeping people informed, that want to be informed, here's where we are now with Davey Dude:

We've been doing speech therapy now for almost 3 months. I'm so glad we decided to do it. The differences in Davey have been really great. He's so happy again. He's understanding what we're saying and he's able to communicate certain needs of his own. We still have a lot of work to do, but to see him happy and comfortable in his world, when he was starting to get so frustrated, it a relief beyond anything you can imagine.

About two weeks ago we got a phone call that the kids insurance was no longer going to pay for Davey's speech therapy. Speech delays, on their own, are not covered by our insurance anymore. I was immediately thrown back into this scary place where I had NO idea what to do. After reading our insurance manual (that thing is a monster), I found that if a behavioral psychologist and a pediatrician signed off on a speech therapy request, the insurance company would cover him. So we set up an appointment on Friday and lucked out that the behavioral psychologist had a cancellation this morning so we could get in right away.

These appointments with a behavioral psychologist are crazy in depth. Three hours of questions on top of questions while we watch to see how he plays with toys. It's enough to make you go insane because all you're thinking about is "Can we get to the end of this so you can tell me what we're up against?" And then of course, three hours later, the psychologist couldn't tell us anything. She wanted to meet with his speech therapist to compile all of the information she could to pinpoint exactly what's going on. What she would tell me is that if he does have autism it's very slight and that it wouldn't even be under the umbrella of Autism Spectrum Disorder. Apparently there are cases of autism that just barely qualify as autism, but aren't in the spectrum. It's very confusing. It could also be something called P.D.D., or Pervasive Defiant Disorder. It seems like P.D.D. and O.D.D. (Oppositional Defiant Disorder) are disorders that ride the line of autism but cannot be classified as autism. Basically, besides the delay in speech, Davey doesn't get rewards and consequences. He doesn't care about them. This isn't to say he's a defiant kid or unruly. He's quite the opposite. He's one of the easiest kids. He's so pleased with everything. But unless it's something he's interested in, he won't attend to it. If you asked Davey to clean up his room so he can earn a sticker, he wouldn't care about the sticker. This can become a problem when he reaches school age because if a teacher says "It's circle time", even if Davey knows what circle time means, he doesn't make the connection that it's something he needs to go do, even if he's not interested. Does that make sense? It barely does to me.

Everything has been a roller coaster lately. I've been anxious and overly worried. And I guess that's typical, whether or not your child is going through any of this. I do feel a sense of peace after today though. Because Davey is happy. I measure success in life by happiness. Davey is living a successful life as a 3 year old. The rest of this stuff, the behaviors, the speech, it can be learned. My dad said something to me (well several things) that really stuck : "Everybody has something". And that's so true. Charlie had her thing, she may have more things. I've had anxiety and depression, my brother has OCD, I have friends who have a variety of medical issues - we all have something.

With all of that said, I'm just thinking about how grateful I am. It sounds weird, because we all want the best for our kids, but I'm kind of glad my kids have hit the big bumps in their road so early. I want so badly for them to value life and enjoy life and understand that even though it's hard, it's also really, really fun. And I feel like they've been so fortunate to learn that lesson so early.

Thursday, September 27, 2012

From the minute I was wheeled out of the operating room after having Charlie and Davey, and being brought to the window to see them for the first time, the word "perfect" was all I could see, think and feel. In two months exactly, the twins will be 3 and "perfect" is still the only word I have for these little birds.

It's been a hard week. And I think we have some harder ones ahead. I'm not sure what direction things will go and it's the not knowing that, for me, has been even more difficult. I was never a control freak...until I had kids. Now I live by a plan. But you can't plan this kids growing up thing. There's just curve balls right and left.

Over the last 2 years, we've gone through a lot with Charlie and it seems like it's all we talked about for awhile. It may have seemed like Davey was overlooked. Admittedly, we took advantage and enjoyed the fact that Davey has always been a relatively easy child. He's had his moments. Teething was so hard on him, though it never bothered Charlie. He had a short spell of major tantrums soon after Charlie's surgeries were all over, which we attributed separation anxiety. Davey's always been a quirky, sweet, head in the clouds, but also very focused child. We've always known he was smarter than the average bear.

When Davey went through that tantrum spell back in late July of last year, it was alarming to some and so I took him to our pediatrician. I mentioned that along with the recent tantrums, he had some obsessive behaviors. He tended to play with only certain color blocks and he liked to carry certain toys with him everywhere, never really letting them go no matter what. It was the first time he was screened for Autism. Our doctor said, first of all, he was about 20 months old and that was generally far too early to worry about any sort of Autistic symptoms, but that Davey's behaviors seemed pretty normal. They weren't like Charlie's, but that didn't make them something to worry about. And at the kids two year checkup a few months later, both kids were screened for Autism because it's apparently routine at those checkups.

It was back in May that the question came up again, if Davey's behavior was...off. Charlie was really starting to talk and communicate while Davey wasn't. He was saying his alphabet and counting and saying a few other things here and there, but most of them were things he was repeating rather than asking for. He's always been easily distracted but getting his attention seemed harder than it should be. At the time, I wasn't concerned. I just thought my kid was quirky. I liked that he was quiet and mild mannered and so observant. Still, the concern seemed to be genuine and came from family and so, despite my own feelings, I thought there was a possibility I was missing something. I took Davey for his third Autism screening. The pediatrician came back with the same results - Davey was fine. He was just a super smart, kind of quiet kid. He did mention that we could consider speech therapy for Davey because he was delayed, but that it was ultimately up to Joe and I. Knowing that Davey was premature, a twin, AND a boy, we had anticipated some delays and decided to give it a little more time before pursuing anything. Not to mention, Charlie talks so much and it's non-stop. So there's rarely a need for Davey to talk. He was a happy kid and we felt like if wasn't broken, why fix it.

Here we are now. We're two months from Charlie and Davey's 3rd birthday. And Davey's speech hasn't improved. I don't know that it's regressed more, but it hasn't gotten better. I was starting to feel bad that my kid couldn't tell me what was bothering him or what he wanted. So I called our pediatrician and went ahead with the referral to a speech therapist.

Monday was our first meeting. It was short and was just a chance for the therapists to get to know Davey a little and ask some questions. I didn't leave the meeting feeling any sense of relief like I was hoping, I have to say. While nothing was definitely said about Davey, other than him having a speech delay, the Autism subject did come back up. It wasn't that he had it. But it wasn't that he didn't. Ultimately, a Behavior Specialist is really who determines that kind of thing. Should Davey not show any real improvement over the next month or 2, the speech therapist said she'd recommend we take a meeting with the Behavior Specialist. Which, to me, translates as "Good luck being a nervous wreck for the next month or 2 while you wait."

After every screening we had with Davey I've breathed a sigh of relief. Everything's going to be ok. But this feels so open ended. And in an effort to get educated about speech delays, of course there's a lot of mention of Autism. One in 88 children are diagnosed with Autism Spectrum Disorder. And I find myself sifting through all of my friends on Facebook, counting every kid and wondering, is my kid the one in all of these kids? Can I handle that? Can we handle that? Should I even be thinking about that? I guess there's this little tiny thing inside of me that thinks this is a real possibility. I could hear this dreaded diagnosis in the next 4 to 6 weeks. And then what? Of course any and everyone would say it's silly to worry about something that hasn't even happened yet. But, ya know, how realistic is that? How realistic is it for me to not spend some of this time worrying?

Don't read things on the Internet, you guys. No good can come from it.

At the moment, we're just dealing with a speech delay. And it may be the only thing we have to deal with. Davey likes to be held while you read to him and is such a smiley, happy kid. He likes to race Charlie through the kitchen and shouts "On your mark, get set, GO!" He's really into puzzles and cars and just recently graduated to a big kid bed. He's also recently discovered how to open all the doors and that he's tall enough to control the lights being on or off. The power is going straight to his head. His sweetness has never changed. And if there's something more to what's going on with Davey, well, then, there just is. I guess I can't too far ahead of myself. Those lines of what's a disorder and what's just quirky behavior are SO THIN these days. You can barely see them.

It's been such a hard week. I've cried more times than I can count. Just riding my bike on my normal route, listening to "Don't Stop Till You Get Enough" and boom - I'm crying. I start to wonder if the people passing me in cars can tell I'm crying. And then I start to think, "who cares". When Davey repeats a word and uses it correctly, my heart skips a beat and I get this false sense of "Oh, ok! He's in the clear! He asked for an apple!" and then just as quickly as I think that, it takes me 50 tries to get him to say the next thing. No matter what, this is hard.

But, ya know, Joe and I went through so much with Charlie. It was so hard. But at the same time, it made us strong. It made us confident. I'm a firm believer in things happening for a reason. I have these scars on my arm from a car accident 7 years ago. I used to hate them. I hated wearing sleeveless shirts. And when Charlie had her surgery and the doctor said, "She'll always have those scars!", I thought, "THAT'S why I have those scars of mine! So Charlie will know you can grow up and have tons of friends and fall in love and have a family, even with big, visible scars." And now I think, maybe Charlie's surgeries happened as a way to toughen us up. Because here we are at our next challenge. And trust me - speech therapy alone is a challenge. It's constant talking and constant observing, all while Charlie is talking and answering all the questions I ask Davey before he gets a chance and watching Davey get frustrated that things aren't like they were just last week, and needing to cook and clean and sleep and shower and do those things I need to do. It's a challenge. But I know we've got it. I know we can do it.

It can be really hard sometimes. It's really easy for friends and family to starting talking medical talk or giving more advice than I asked for, despite the fact that it's coming from the best place (I know that). I'm currently in a position where I just want to talk about it and hear "Davey is awesome. And that's just that". There are a lot of times that I feel like I can't talk to anyone. Not that no one around me wants to listen. But it's such a sensitive topic. And I know I'm sensitive. And if I'm afraid that I'll hear something I don't want to hear, I just won't talk about it. And then I start to get that lonely feeling. But I've started to find my small handful of people to talk to. I'm really happy that Joe is one of those people. We are a great team, that Joe and I.

I'm fried, I'm drained, and I just want to curl up in a ball and sleep it off. All this worry. It's taxing. I started this blog so that people could read about the things we went through with Charlie and in hopes it would be helpful to parents with kids that were born with Charlie's condition or one similar. And I started it for my parent friends to read and to know that we're all deep in stress and struggle. We're all in this together. It's weird to think I might pick this blog back up in hopes that I can be helpful to other parents with kids with speech delays and other possible disorders. And I'm tearing up as I type this - I really, really hope we're all in this together.

Yeah I just noticed the date on my last post. Did that say May 24th? No. That can't be right. Looks like ol' Blogger is making mistakes right and left.

Ok so it's possible I have been gone for awhile. It is possible. And for those wondering, I'll tell you where I've been - I've been in no more cast, two 20 month old babies, everyone and their mom is in town, trying to keep up, never stop baking, summer time, fun time...land. That's where I've been.

But I sure have missed it around here.

Since I started this blog, in part, because of Charlie and her surgeries and spica casts, let's start there.

June 6th was a really big day for us. It was the end of the year and a half long journey we started in correcting Charlie's legs. After being born with her knees being hyper extended (bent in the opposite direction) and having her feet literally at her ears as a result of her legs being dislocated from her hips, Charlie underwent three corrective surgeries. From those surgeries she was put in a total of five spica casts. And on June 6th, after cutting tendons and putting in metal plates, the last cast came off. She was done. We (SHE) had made it! It was a day that was about as great as the day my kids were born. Finally we could start looking forward to first steps and Charlie getting a chance to get her brother back after all those times he took her toys and ran off. She could go get them back. And we knew Davey would be glad she did. He wanted to walk and run with his sister. They were meant to do that together.

Ready for this dirty thing to come off...

Ok so she's a little young to understand that taking a power saw to her leg is actually going to be a good thing.

That bright yellow patch there at the bottom right...yeah, thats cheese. So...there's that.

I know, I know, this is a sad sight to see, but it's over! Remember that. And babies bounce back quick...

Told you!

Every day since June 6th has been remarkable. I swear. EVERY SINGLE DAY. I'd be lying if I said the 18 months we went through to get here were easy. But none of that matters now. We're bending those knees, we're smiling, we're laughing, we're having early symptoms of terrible two's, we're eating mac and cheese, and we're living life. Who cares how we got here? We're here!

Tuesday, May 24, 2011

This week, thing one and thing two will be 18 months old. A year and a half! Halfway to two! When did this happen? Was anyone gonna tell me? At the risk of sounding cliche, they really do grow up way too fast. Two weeks from yesterday Charlie will have her cast off and all these surgeries will be behind us. Davey runs like Prefontaine and climbs up on the couch to flip through books. It's too fast. It's just too fast.

Oh but they just keep getting prettier and funnier and prettier and smarter and prettier. They're just these balls of magic and curiosity and emotion and fingers and soft hair all wrapped up in shiny twine. I love them so.

In honor of my sweet, infuriating, wonderful balls of twine, I wanted to make a tasty half birthday treat. But one I could enjoy as well in the midst of my new 2/3 vegan diet. And then I stumbled upon a vegan blog so heavenly and inspirational. Oh She Glows has amazing recipe after recipe. And I highly recommend reading her background story, especially if your a mommy like me, who has battled weight issues post baby.

I found this awesome vegan recipe for snickerdoodles (an all time favorite) on the blog. The recipe cuts out animal product as well as a lot of sugar. And I can vouch that these cookies are sweet and crunchy and downright delightful. There's nothing about these cookies that tastes vegan. Cook them. I dare you.

I've adapted the recipe to use natural sugars instead of refined. For the original recipe go here :)

Directions: In a small bowl, mix the 1/2 flax egg. Set aside. In a medium sized bowl cream the sugar, Earth Balance (or butter), and vanilla until incorporated. Add in the flax egg and beat for about 60 seconds. In another bowl, whisk the dry ingredients together (cream of tartar, baking soda, flour, and pinch of cinnamon). Add the dry mixture to the wet mixture and stir well. Use your hands to knead together the dough.

Form cookie balls from the dough, roll them around in the cinnamon sugar mixture, and place them on a cookie sheet. Use a fork to flatten each ball.

Note: I have heard that you might be able to get away with substituting the cream of tartar and baking soda with baking powder. However, I have not tested this out myself. If you try this leave a comment and let me know how it worked out.

Thursday, May 19, 2011

I've been beyond overwhelmed lately. And truthfully, a large majority of that feeling comes from trying to keep all these plates spinning per usual in an effort to give the illusion that I am just as strong as the next gal. What's funny about that is that so often I find myself frustrated with the lack of honesty amoung moms. So unwilling to admit, for most of us (ya know the ones of us who aren't vacuuming in pearls), to be a B- mom is sometimes (usually) the best week can do. It's not for a lack of trying for that A+. Although there are days where we haven't slept for a week, we haven't gotten past the shampoo part of our shower routine and the lack of conditioner is taking it's toll, we're covered in a drool/chewed up food/baby poop mixture that has made itself stain remover resistant...and the need to try for an A+ is nonexistent. But generally speaking, of all the moms I know personally, we're all trying our friggin hardest.

So let me be honest. Let me tell you that I'm completely in over my head these days. Let me share with you this neurotic, control freak personality that has taken over. My friend Sarah recommended that I blog the stress out. I figure by doing so at least one of three things will happen: 1. I will quite literally blog my stress away and feel immediate relief when I hit the "post" button, 2. I will have at least made myself relatable to other moms and we can collectively give ourselves a break, or 3. Someone will read this and send me a fat check to pay for some top notch therapy because I am a certified looney tune.

I feel like I wake up every morning with a good attitude. I'm a morning person. Getting up early and having a full day is something I enjoy. So having a sunny disposition each morning is something I'm totally capable of. But within an hour of the kids and I being up, two little faces are crying at me, needing me to do...something...I should know their cues better by now...and all this loud crying has made me forget my plan already. And it's only 7am. I spend the rest of my day grabbing for slippery limbs while I'm falling out of the impossible goal tree. By the end of most days I sigh and say to myself "well they went to bed with fingers and toes. I guess that's something."

But with Charlie in a cast there's this new stress. There's the stress of this third element. There's no room in our inn for it. But it's here regardless. After 18 months of our lives revolving around spica cast care and medical jargon and specialists, I'm over it. And then I'm greated with my old faithful friend guilt. All this me, me, me stuff. Am I in a cast? Have I had to relearn how to stand or sit up three different times? Have I undergone surgery 3 times in 12 months? Sure haven't. This BABY is showing me up in strength. And then sweet Davey takes a spill at my parents house this week and scuffs up that button nose I love. Because I wasn't looking. And I know accidents happen. And I am that mom that just wants their kids to be kids. And that means scrapes and bruises sometimes. But I guess I'm giving myself a hard time about it because I already fear that all this time weve spent focusing on Charlie and all this time we've sent him over to the grandparents house through all of this, is the beginning of a complex. I worry he won't know his value to me. What if he cries when one of his grandmothers hands him to me? I haven't been able to give him my full attention. And because if my lack of attention, he fell.

The good news is, I know I'm being irrational. The other good news is I obviously am over the top in love with my children.

But it's a lot right now. And today I just looked at them both and cried. I looked at that cast and that banged up face and thought, "I'm failing." Maybe that's too harsh. I'm not failing. It hardly seems like I'm doing great though. I keep joking to people that I can't go to the grocery store with both kids any time soon. If people already give me weird looks about one child in a cast, what will they think when the see two kids with ailments? We'll be Herman's hermits for the next couple weeks.

Ya know what EVERYBODY (not just moms -all of you)? Maybe there's something to be said for how hard we try. The amount of effort we put forth. Actions speaking louder. Maybe Davey won't have a complex about my lack of attention because when I DO see him, he is smothered to smithereens in hugs and kisses and "I love you"'s. Maybe Charlie will never care about her scars. Maybe she'll be a track star because she knows what it took to get her walking. Maybe all this B- work will still result in amazing, wonderful people. Judging by results from the last 18 months, they're gonna be awesome whether or not I condition my frizzball head.

I'm gonna always shoot for an A+. My kids deserve that effort. But I'm gonna work on accepting the fact that a B- is still above average. And that ain't bad.

I'm a proud mother of twins and a proud wife of a man I loved before I even knew his name. After getting married and finding out twins were on the way, my husband and I moved to our remote house on the hill. Just on the edge of the Mississippi Delta, our home is far from the usual conveniences. I've spent the past few years trying to learn how to make everything I need for those days that driving 20 minutes to the nearest grocery is completely out of the question. And what good is an adventure in the kitchen if I can't share it with anyone? Hello blogosphere!